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Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders

Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framew...

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Autores principales: Jansen, Marleen E., Klein, Anne W., Buitenhuis, Erika C., Rodenburg, Wendy, Cornel, Martina C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938310/
https://www.ncbi.nlm.nih.gov/pubmed/33692977
http://dx.doi.org/10.3389/fped.2021.635353
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author Jansen, Marleen E.
Klein, Anne W.
Buitenhuis, Erika C.
Rodenburg, Wendy
Cornel, Martina C.
author_facet Jansen, Marleen E.
Klein, Anne W.
Buitenhuis, Erika C.
Rodenburg, Wendy
Cornel, Martina C.
author_sort Jansen, Marleen E.
collection PubMed
description Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framework was developed based on international NBS frameworks to gain insight in test properties, clinical findings, follow-up and implementation. A stakeholder process took place with implications for the planning of the expanded NBS panel. The evaluation framework progressed into a go/no go framework to start national screening, and is currently explored as basis for continuous evaluation of the NBS panel. The framework and stakeholder process may serve as an example for other programmes.
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spelling pubmed-79383102021-03-09 Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders Jansen, Marleen E. Klein, Anne W. Buitenhuis, Erika C. Rodenburg, Wendy Cornel, Martina C. Front Pediatr Pediatrics Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framework was developed based on international NBS frameworks to gain insight in test properties, clinical findings, follow-up and implementation. A stakeholder process took place with implications for the planning of the expanded NBS panel. The evaluation framework progressed into a go/no go framework to start national screening, and is currently explored as basis for continuous evaluation of the NBS panel. The framework and stakeholder process may serve as an example for other programmes. Frontiers Media S.A. 2021-02-22 /pmc/articles/PMC7938310/ /pubmed/33692977 http://dx.doi.org/10.3389/fped.2021.635353 Text en Copyright © 2021 Jansen, Klein, Buitenhuis, Rodenburg and Cornel. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Jansen, Marleen E.
Klein, Anne W.
Buitenhuis, Erika C.
Rodenburg, Wendy
Cornel, Martina C.
Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title_full Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title_fullStr Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title_full_unstemmed Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title_short Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
title_sort expanded neonatal bloodspot screening programmes: an evaluation framework to discuss new conditions with stakeholders
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938310/
https://www.ncbi.nlm.nih.gov/pubmed/33692977
http://dx.doi.org/10.3389/fped.2021.635353
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